Hi , i had a reoccurrence in my aput at and had taxol and avastin for 4 months , the tumour in my arm pit shrank but lung mets didn’t work. So I have been changed to xeloda , just wanted to see what success people had with it.? I went on a xeloda site and it said it was the women that didn’t have any treatment options and I thought this cant be right. Pleaseme know know. Thanks
Hiya pinkylou - Xeloda has helped to keep my bone & liver mets stable for over 8 years. You’ll find a lot of info and discussion about Xeloda (the generic name is capecitabine) on these forums - just do a search and all our posts will come up for you to read. So many of us have had great success with this treatment, and hope you do too! Marilyn xx
Hi pinkylou,
I have put for you below the link to BCC’s publication for Capecitabine (Xeloda). If you would like any further information please don’t hesitate to contact the helpline team here.
www2.breastcancercare.org.uk/publications/treatment-side-effects/capecitabine-xeloda-bcc121
Take care,
Jo, Facilitator
Marilyn
What side effects do you have and have you had them for the whole 8 years on Xeloda?
Ann xx
Hi Ann - Side effects vary depending on how sensitive you are to the treatment and the daily dose you’re taking - some of us have almost no side effects, others have the frequently-cited hand/foot syndrome and a few of us simply can’t tolerate the treatment at all, so have to come off it after one or two cycles. For most of the 8 years, I was on a half-dose (1000mg x twice a day; two weeks on and one week off), so my side effects weren’t too tough - I’ve been off capecitabine now for a few weeks, and my feet are looking & feeling a lot better!
Do have a look at all the hundreds of posts here on the BCC forums about our experiences with capecitabine - you’ll see how varied our responses to this treatment have been. Hope it treats you kindly and works well for you too.
Marilyn x
Thanks, Marilyn. I am on weekly Epirubicin at present but am not sure if it is working and was wondering what other options are like. Hence, my interest.
Can I ask why you have come off it now? Is it just a break or do they think you don’t need it now?
Ann xx
How do you search the forums for the information on xeloda ?
Hi Pinkylou
Is this the link you are looking for? it’s the BCC publication about xeloda
http://www2.breastcancercare.org.uk/publications/treatment-side-effects/capecitabine-xeloda-bcc121
You can also search the forum threads by using the ‘search’ facility at the top of the page where it says ‘search this site’, if you have any problems please let me know and I will try to help
Best wishes
Lucy
Hi Pinkylou - I’m just on my 3rd cycle of capecitabine and due to see my onc on Friday to see if she thinks it’s working so too early to tell. There are a few threads on this chemo under Sedondaries: treatments and medical issues. The main one is breastcancercare.org.uk.community/forums/xeloda-capecitabine-your-top-tips-please
I don’t think this one is a last resort. It’s the first one I’ve had since being diagnosed with secondaries and I still have a number of treatment options to try if it’s not working. I’m hoping to stay on it as 1 - I haven’t lost my hair on it 2 - it’s tablets so don’t need to find a good vein and 3 - don’t need to take steroids so can get a decent sleep.
OK, it’s time for me to announce that, after 8 years on the peachy pills, I’ve stopped taking Xeloda for the forseeable future - but stopping is nothing to do with my BC mets. I’ve been having increasing problems with kidney function that escallated recently and put me into hospital - opinions vary about what’s been causing these - diabetes is a key culprit - but my onc has taken me off Xeloda (and ibandronic acid) just in case this had a part in causing me problems. I’ve also come off Metformin (diabetes) and Losartan (high blood pressure) - the Metformin is particularly tough on kidneys, so I won’t be going back on that either.
So . . . I hereby reluctantly resign as your Xeloda Queen - my onc hasn’t ruled out going back onto it at some point in the future, but get the impression that this is unlikely, given the state of my kidney function. But . . . who knows???
Hope everyone on the peachy pills is doing well, and that they’re working!
Marilyn xx (ex-Xeloda Queen)
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Hi all
I have been on Xeloda since jan 09 and it has,thank God kept my spine met stable. am 42 and too young but hey that’s life
muddy
Marif, We will not allow you to abdicate! You are still our Xeloda Queen! I have been on and off the Xedoa over a several years but have not reached your level yet and will take a few years to get there. So we refuse to accept your resignation. MARIF YOU ARE STILL OUR XELODA QUEEN> Much love form a fellow user! Val
Oh Val . . . *blushes* xxx
I have just been put on Xeloda. How long do people find it takes before SEs appear?
Ann
Hi I have just started xeloda , so 14 days , I am on my week off, I am finding it quite tolerable so far. A bit of sickness just take my pill , I find usually if I eat something fatty. I am day 6 of my week off started to get sore hands but I also have started the gym do I am not sure if it is that. Let me know how you get on . Thanks
pinkylou
I hope things continue to go well. Were you actually sick or did you just feel nauseous?
Ann
Ann, I found most SEs came on gradually, but don’t really tend to wear off in the week off unfortunately. I’ve had problems with acid reflux and still trying to get the meds right to relieve it. A bit tired but comes and goes and just started to have a bit more bother with hands on 3rd cycle.
Pinkylou if your hands are a bit red and look a bit wrinkly (like you’ve been swimming) and shiny with smooth fingertips it could be SEs kicking in.
Hi , ,I haven’tactually been sick just felt nauseous , my hands haven’t wrinkled, just a not sore . I take 3600 mg per day obviously it depends on your weight, I feel so much better now I am not on taxol , x
Thanks, gail5.How did your oncoogy appt go last Friday?
For the people who have been on Xeloda for years and if it is working, do they just keep you on it indefinitely or do they try taking you off?
pinkylou - I am on 3250 per day. I am glad you haven’t actually been sick. I take Metoclopramide which helps with the nausea/acid but am finding I don’t need to take as much as when on weekly Epirubicin. So far, I feel better, too.
Ann
Hi, I’ve just started my ninth cycle of Xeloda. It’s working really, really well, tumour markers down from 6,500 to 49 :0 I have very little in the way of side effects but think I may be just lucky in that respect, slightly sore feet but nothing horrendous, no sickness and not much fatigue either! I’ve been told different things by different oncs - one says I can stay on it indefinitely and the other has said she would like to review it after a year, but I will fight tooth and nail to stay on it as long as it’s working 